Cystic fibrosis drug agreement
A DRUG which prolongs the lives of cystic fibrosis patients will be made available in Wales after an agreement was reached with the manufacturer.
The Welsh Government has confirmed that Orkambi and Symkevi will be offered to patients on the Welsh NHS – where clinically appropriate – following positive talks with representatives of Vertex Pharmaceuticals.
Orkambi has been described as a “game changer” as it treats the underlying genetic mutation of cystic fibrosis, rather than only treating the symptoms.
It can significantly improve lung function and reduce breathing difficulties, and can be given to patients as young as two.
Last month Vertex reached an agreement to offer the drug to patients in England, but there was uncertainty over whether the same deal would be offered in Wales.
However, a statement from Health Minister Vaughan Gething read: “I made clear my expectation that Vertex must offer NHS Wales the same agreement made with NHS England.
“Following a short but intensive period of joint work between Welsh Government officials, the NHS Wales Procurement Service and Vertex, I am pleased to confirm that expectation has now been met.
“Today I have agreed in principle the terms of an agreement which will mean patients in Wales have access to Orkambi and Symkevi as well as continued access to Kalydeco where these medicines are clinically appropriate. Work will now progress to finalise the detail of the contract between Vertex and the NHS Wales Procurement Service.
“I am very aware that patients and their families will expect these medicines to be made available promptly. I have therefore asked for the agreement to be finalised before the end of November to allow the highest priority patients to access treatment in December with all eligible patients being from 2020.”
In 2017, patients and families affected by cystic fibrosis protested on the steps of the Senedd in a bid to make Orkambi free at the point of need for patients with the condition.
Families across the country had raised money to get access to the drug privately at huge expense in countries such as Argentina.
Ludovic Fenaux, Senior Vice President, offered treatment
Vertex International, said: “Today’s announcement is good news for the approximately 270 eligible cystic fibrosis patients in Wales who will soon have access to CFTR modulators to treat the underlying cause of their disease.
“We thank the authorities in Wales for their collaboration in accepting this offer under the same terms as were recently announced in England.”